I just got back from the 7th Annual Autism Law Summit. For three days I listened to lawyers, self-advocates, ABA therapists, politicians and fellow parents discuss legal issues regarding autism health insurance coverage. I learned so much and will probably devote the next few blogs to what I’ve learned, but what is at the forefront of my mind are the stories the speakers—most of whom are autism parents themselves—told about their children, and how even years later, they still choke up when discussing their children’s diagnoses and struggles.
I listened to Lt. Governor Brian Calley of Michigan, a Republican, talk about how he realized his then 2-year old daughter, Reagan, was autistic. A parent of an autistic child had come to see him in his office, bringing along her autistic son to discuss autism legislation and how important it was to her family. Looking at her son, he realized autism was behind his daughter’s meltdowns and insistence on sameness. His voice choked as he discussed taking her for a formal diagnosis and getting her treatment.
Peter Bell, Executive Vice President of Programs and Services for Autism Speaks, spoke emotionally of his son Tyler’s struggles with catatonia and a seizure disorder. When he talked about Tyler’s future and how he should be in college now at age 20, we could all feel his pain.
It wasn’t just the “celebrities” of the autism movement who shared their stories and they weren’t all sad, but they were often bittersweet because we aren’t celebrating the achievements we thought we would. I watched a mom hold back tears discussing her pride at her teenage son holding a job at McDonald’s, because she never thought that day would come. And while a mom spoke of the hours of ABA needed over a period of months just to get her child to sit at a table for a few minutes, another mom broke down describing the early intervention that has allowed her autistic son to be mainstreamed.
We autism parents share a strong bond and our stories—and our hopes for our children are achingly similar. But still, there is something about autism that seems to be different from other conditions. There is something about autism that can cause a father with an adult son to be overcome when speaking about a long-ago diagnosis—and results in those of us listening to him to tear up, as well. It just hits too close to home.
It makes me wonder—what is it about autism that produces such strong emotional responses in us parents? I used to think of myself as a tough chick and now I find myself with an all-too-familiar lump in my throat when I talk about when I first knew—really knew—that Ryan had autism, and I feel that same lump when someone shares their story.
I think one of the unique things about autism, is so many of us had a wonderful, happy and typical child and then watched that child slip away and be replaced by a different child. In some ways, it’s as if the child you knew had died, and was replaced by his doppelganger, leaving behind a stranger in your home. I think sometimes it would be easier to have a child disabled at birth. Your expectations, hopes and dreams would be different from the outset. With autism, you have a typical child for over a year, only to see them regress into themselves, become quiet and withdrawn.
Sometimes I feel as if there is a parallel universe—one where Ryan didn’t become autistic and I imagine the same future for him as his siblings…one where I talk about Ryan going to college with certainty rather than wild hope. And one where my husband speaks of Ryan’s kids and what they’ll be like, and I nod in sincere agreement, rather than dwelling on the unlikelihood of grandchildren.
So when I hear an autism parent choke up when discussing their child, I identify totally with them—we are the same. I know they, too are imagining the parallel universe where their children are healthy and happy. The pain of “what if” grabs us every time, and from what I’ve seen across the autism community, time does little to diminish it.